Providing Nutrition Services for Infants, Children, and Adults with Developmental Disabilities and Special Health Care Needs

from the association

ADA REPORTS

Position of the American Dietetic Association: Providing Nutrition Services for Infants, Children, and Adults with Developmental Disabilities and Special Health Care Needs It is the position of the American Dietetic Association that nutrition services are essential components of comprehensive care for infants, children, and adults with developmental disabilities and special health care needs. Nutrition services should be provided throughout the life cycle in health care, educational, and vocational programs in a manner that is interdisciplinary, family centered, community based, and culturally competent. Persons with developmental disabilities and special health care needs frequently have nutrition problems including growth alterations (such as failure to thrive, obesity, and growth retardation) metabolic disorders, poor feeding skills, medicationnutrient interactions, and partial or total dependence on enteral or parenteral nutrition. Poor health habits, limited access to services, and longterm use of multiple medications are considered risk factors for additional health problems. Legislation for individuals with special needs has evolved over time, resulting in a transition from institutional facilities and programs to community living. The expansion of public access to technology and health information on the Internet challenges dietetics professionals to provide accurate scientific information for those with developmental disabilities and special health care needs. Nationally credentialed dietetics professionals are best prepared to provide appropriate nutri-

Copyright © 2004 by the American Dietetic Association. 0002-8223/04/10401-0020$30.00/0 doi: 10.1016/j.jada.2003.11.002

tion information as it pertains to wellness and the maintenance of good health and quality of lifestyle. POSTITION STATEMENT It is the position of the American Dietetic Association that nutrition services are essential components of comprehensive care for infants, children, and adults with developmental disabilities and special health care needs. DEFINING THE POPULATION Individuals with developmental disabilities (1) have diagnoses and conditions that place them at nutritional risk. A developmental disability may be the result of identified etiologies (eg, chromosomal abnormalities, congenital anomalies, inherited metabolic disorders, specific syndromes, neuromuscular dysfunction) or may not be associated with any diagnosed condition. Occasionally, persons may have two or more conditions (eg, cerebral palsy and epilepsy, Down’s syndrome and congenital heart disease (2,3). Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally (4). A survey of children from birth to age three years with developmental delays in early intervention programs found 79% to 90% had one or more nutrition risk indicators (5,6). The Centers for Disease Control and Prevention (CDC) reported that 17% of children under

© 2004 by the American Dietetic Association

18 years of age have some type of developmental disability (7). The majority of children with special health care needs, even those with complex medical conditions, now live to adulthood. Legislative efforts and resulting programs promoting the themes of deinstitutionalization, inclusion, and individual empowerment have created the expansion of community-based residential settings and home-based services over time (8,9). The term “developmental disabilities” includes those people whose cognitive disability or other disability is severe enough to require ongoing coordinated services and support. There are 3 to 4 million Americans with a developmental disability and another 3 million who have milder forms of cognitive disabilities or mental retardation (10,11). Mental retardation is manifest before age 18 years (12) and is defined as a substantial limitation in present functioning. It is characterized by significantly subaverage intellectual function, existing concurrently with related limitation in two or more of the following areas: communication, self-care, functional academics and home-living community use, self-direction, health and safety, leisure, work, and social skills. Mental retardation is the most common developmental disability and ranks first among chronic conditions causing major activity limitations among persons in the United States (13). Infants born prematurely and with low birth weights have increased in numbers over the last 20 years; however, in that same period, infant and neonatal mortality rates improved dramatically. Being born too small or

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ADA REPORTS too soon entails high risk of serious morbidity contributing to long-term neurologic impairment. Premature infants have an increased risk for cerebral palsy, mental retardation, sensory impairment, developmental delays, and learning and school problems. Nutrition plays a key role in the prevention of prematurity and in neonatal care during hospitalization and in the follow-up period (14). The range of health problems for individuals with developmental disabilities includes increased risk for obesity, cardiovascular disease, dental, hearing and vision problems, and poor conditioning and fitness. The type of living arrangement is strongly linked to obesity. Fifty-five percent of individuals with mild cognitive limitations residing with their natural families were found to be obese as compared with those living in a structured setting such as a group home/ community-living arrangement (15). Studies show a strong link between obesity and discrimination along with a predisposition to heart disease. A study investigating a population of 1,063 people 50 to 88 years of age with lifelong cognitive disability found that more than 50% of this older population had major physical problems: 17% had epilepsy, 21% musculoskeletal impairments, 14% cardiovascular disease, 32% visual problems, and 40% were overweight. Many of these problems are treatable, but there was a lack of available specialized medical care (16,17). LEGISLATION Legislative support for infants, children, and adults with developmental disabilities and special health care needs has increased drastically in the last three decades (18). Recent legislative efforts and parental advocacy have driven this improvement. Along with the legislative effort, there has been an increase in the populations that meet the definition of special needs and developmental disabilities. Historically, individuals with developmental disabilities were cared for in institutions (18). During the 1970s, landmark legislation caused the size and number of institutions to decrease, and treatment standards were imposed, including nutrition standards. Nationally, the average number of residential settings was re-

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duced by two-thirds from 1970 to 1995. Closing and downsizing institutions is evidence of the transformation of national policy affecting individuals with developmental disabilities over the past 25 years. It has been, in part, an opportunity for dietetics professionals working in community, educational, and clinical settings (19). Legislation that impacts services for individuals with developmental disabilities and special needs first originated in 1963 as the Developmental Disabilities Assistance and Bill of Rights Act (Figure 1). Through this act, federal funds supported the development of state councils, protection and advocacy systems, university training programs, and projects of national significance. Nutrition training has been included in university centers and training projects (1). The year 2000 marked the twentyfifth anniversary of IDEA (the Individuals with Disabilities Education Act), the tenth anniversary of the Americans with Disabilities Act, and the enactment of the revised Developmental Disabilities Assistance and Bill of Rights Act (1). Current legislation emphasizes fundamental systems change, including legal services and advocacy and capacity building at the state and local levels. The focus of the legislation is on helping people with developmental disabilities and their families obtain the information, assistive technology, and support that they need to make more informed choices about where and how to live. The revised Developmental Disabilities Assistance and Bill of Rights Act continues to support university-affiliated programs to provide interdisciplinary preservice preparation of students and fellows, communications, and community services and dissemination of information and research findings (1). Infants and Children Important legislation for infants and children with special needs first appeared in the 1920s with the passage of the Maternity and Infant Act. In 1935, Title V of the Social Security Act was passed providing for three programs, Maternal and Child Health, Crippled Children’s Services, and Child Welfare. Demonstration clinical programs for children with

(1) According to the Developmental Disabilities Assistance and Bill of Rights Act of 1990 (PL 101-496) 2000 (PL 106-402): (A) IN GENERAL the term “developmental disability” means a severe chronic disability of an individual that— (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the person attains age twenty-two; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in three or more of the following areas of major life activity; (I) self-care, (II) receptive and expressive language, (III) learning, (IV) mobility, (IV) self-direction, (V) capacity for independent living, (VII) economic sufficiency; and (v) reflects the person’s need for combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of services which are of lifelong or extended duration and are individually planned and coordinated, (B) INFANTS AND YOUNG CHILDREN— Individual from birth to age 9, inclusive who has substantial developmental delay or specific congenital or acquired condition, may be considered to have developmental disability without meeting 3 more of the criteria described in clauses (i) through (v) of subparagraph (A) if the individual, without services and supports, has a high probability of meeting those criteria later in life. Figure 1. Developmental Disabilities Assistance and Bill of Rights Act.

mental retardation emerged in 1950 with workshops on nutrition and mental retardation developed to update the skills and knowledge of nutrition personnel (20). Additional legislation in the 1960s promoted programs to prevent mental retardation through improved prenatal and infancy care, children and youth projects, and training programs in the university centers. Head Start was established in 1965 with a mandate that 10% of the enrolled population must have disabilities (21). Early

ADA REPORTS Head Start (ages 0 to 3 years) was created by Congress in the reauthorization of the Head Start Act in 1994. Early Head Start requires inclusion of children with disabilities, with a provision that at least 10% of the total number of enrollment opportunities be made available to them. Children with disabilities are defined as those children who are eligible for services under Part C of IDEA (22). As a part of IDEA, children with special needs from infancy through adolescence are served by the public school system and early intervention services. Part C is the early intervention component of the legislation that provides services for the child from birth to age three years. Considerable variation exists related to which agencies within a state are involved in early intervention and how services are provided. Whether a state educational or health agency administers the program, it is recommended that a natural setting be utilized. Thus, services are provided in the home, child-care centers or similar settings rather than bringing the child into a centrally located center (22). Nutrition services are listed as a reimbursable service in Part C of the Early Intervention component of IDEA (6). The Child Nutrition Act of 1966 and the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) begun in 1972 provide nutrition assistance to all eligible infants, children, and adolescents, including those with special needs. Unfortunately, all WIC services are terminated at age five years. In recent years, there has been increased emphasis on the importance of ensuring that children with special needs in schools receive substitutions for the regular meal if modifications are required because of their disabilities. This is mandated by the US Department of Agriculture’s nondiscrimination regulations (23) as well as the regulations governing the National School Lunch Program and School Breakfast Program. The regulations require that a physician’s statement be provided, listing the disability, the reason for meal modification, and the specific substitutions needed (ie, diabetic diets, phenylketonuria (PKU), lactose free, blended or pureed, and high or low calorie). The Child and Adult Care Food Programs

must provide modified meals at no extra cost for children, adolescents, and adults with special needs in residential and/or day-care settings. Additionally, the nutrition goals should be included in the child’s or adolescent’s Individualized Education Plan (IEP) or 504 Accommodation plans (24). For example, clients may need individualized meal plans to address specific conditions such as diabetes, dysphagia, or PKU. Although children with special needs may be insured through their parents’ coverage, commercial insurance often has coverage gaps, high premiums, and no mandate to provide benefit packages to meet their needs (25). Nutrition services are frequently not funded for individual clients through Medicaid. In 1997, the Children’s Health Insurance Program (CHIP) was enacted to provide funding to states to deliver health insurance to children and families with incomes too high to qualify for Medicaid and too low to afford private health insurance. Almost all states now have CHIP programs in operation. Adults It is estimated that the total number of adults and children with developmental disabilities including mental retardation is from 3 to 7 million people (9,10). However, financing health care for this population has remained a problem. Medicare covers 480,000 adults with developmental disabilities, with a large percentage also enrolled in Medicaid (25). Although health care for many individuals is funded through Medicaid, many providers refuse to serve this population or limit the number of people served. For example, Medicaid does not cover dental care for adults. The medical and dental care of adults in community-based residences is no longer obtained from a centralized institution staff but from primary care providers in the community (25). Medicaid databases were not designed to identify populations with special health needs, even though most receive health care through public insurance— only 7.1% of those with developmental disabilities have insurance through their employer (25).

CHARACTERISTICS OF THE POPULATION, REVIEW OF SELECTED CONDITIONS, AND NUTRITIONAL RISK FACTORS Research has demonstrated that people with developmental disabilities are at increased risk for heart disease (26), obesity, osteoporosis, seizures, mental illness and behavior disorders, hearing and vision problems, and poor conditioning and fitness. Life expectancy for these individuals has increased to the extent that younger adults with developmental disabilities are expected to demonstrate little disparity in longevity; however, for older adults, disparities continue to exist. The severity of the nutrition problem depends on multiple factors unique to the person (ie, age, level of functioning, severity of the disability, general state of health) and to environmental, educational, training, and social conditions. The altered physical growth rate or growth stunting often seen in persons with developmental disabilities may result from prenatal, perinatal, or postnatal causes. Prenatal causes are varied and include chromosomal aberrations such as Down’s syndrome and exposure to a virus such as cytomegalovirus as well as prenatal exposure to alcohol and drugs. Perinatal and postnatal conditions such as cerebral palsy, bronchopulmonary dysplasia, and congenital heart disease may result in permanent growth stunting because of associated increased energy needs, feeding difficulties, and medical conditions (27-37) (See Table 1). Special growth charts exist for some syndromes and conditions; however, their use in nutrition assessment is limited and controversial. They were developed using very small populations, do not include all growth parameters, and some use very old and retrospective data (38,39). Overweight/Obesity Obesity in persons with developmental disabilities can have negative social consequences and requires greater effort from caregivers; it also contributes to the development of chronic diseases such as diabetes, hypertension, and heart disease. One study found a higher prevalence of overweight in persons with Down’s syndrome than the general popula-

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ADA REPORTS Table 1. Selected syndromes and developmental disabilities: Frequently reported nutrition problems and factors contributing to nutritional risk

Syndrome/disability Cerebral palsy A disorder of muscle control or coordination resulting from injury to the brain during its early (fetal, perinatal, and early childhood) development. There may be associated problems with intellectual, visual, or other functions. Down syndrome A genetic disorder that results from an extra #21 chromosome, causing development problems such as congenital heart disease, mental retardation, short stature, and decreased muscle tone. Prader-Willi syndrome A genetic disorder marked by hypotonia, short stature, hyperphagia, and cognitive impairment; when not carefully managed, characterized by obesity. Autism Classified as a type of pervasive developmental disorder; diagnostic criteria include communication problems, ritualistic behaviors, and inappropriate social interaction Cystic fibrosis (CF) An inherited disorder of the exocrine glands, primarily the pancreas, pulmonary system, and sweat glands, characterized by abnormally thick luminal secretions.

Altered growth, underweight, obesity

Growth problems Failure to thrive

Constipation/ diarrhea Feeding problems

Others

Constipation

Oral/motor Problems

Central nervous system involvement Orthopedic problems Medication/nutrient interaction related to seizure disorder

Risk for obesity

Related to short Constipation stature and limited activity

Poor suck in infancy

Gum disease Increased risk of heart disease Osteoporosis Alzheimer’s

Risk for obesity

Failure to thrive in infancy

N/A

Poor suck in infancy Abnormal foodrelated problems

Risk of diabetes mellitus

N/A

N/A

N/A

Limited food selection Strong food dislikes

Pica Medication/nutrient interaction

N/A

Increased nutrient intake Decreased food intake Decrease of nutrients related to pancreatic insufficiency and chronic pulmonary infection Altered energy needs based on short stature and limited mobility

N/A

N/A

Increase in secondary illnesses: Diabetes Liver disease Ostcoporosis

Constipation

Swallowing problems Urinary tract caused by the infections Arnold Chiari malformation of the brain

Risk for obesity Spina bifida (Myeolomeningocele) Results from a midline defect of the skin, spinal column, and spinal cord. Characterized by hydrocephalus, mental retardation, and lack of muscular control.

tion (15). This prevalence of obesity among persons with Down’s syndrome is a major health problem that warrants further attention from researchers as well as dietetics professionals working with this population.

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The common characteristic of short stature, limited mobility along with inappropriate eating practices such as pica, are seen in clients with syndromes such as Prader-Willi and Lawrence Moon-Bidel. One study rec-

ommended a reduction of energy intake for weight maintenance along with daily aerobic exercise, strict food-control procedures, and an interdisciplinary approach for behavior modification (30).

ADA REPORTS Medication-Nutrient Interaction The long-term use of medication can result in nutrient interactions. Abnormalities in vitamin D, calcium and bone status, constipation, and gum hyperplasia have been found in persons with developmental disabilities who have limited mobility. These abnormalities are associated with the long-term use of the anticonvulsants phenytion and/or phenobarbital. A strong association between anticonvulsant use and ambulatory status was reported (40). Many older adults with developmental disabilities take multiple medications for extended periods of time. They are at risk for complications caused by medication interactions. In addition, medication may have a longer half-life because of decreased lean body mass. Use of medications such as antibiotics for recurrent urinary or respiratory infections may produce gastrointestinal symptoms. Psychotropics may also increase or decrease appetite (41). Constipation is a side effect of long-term psychotropic use, which results in increased use of laxatives and stool softeners. Attention deficit hyperactivity disorder (ADHD) is commonly treated with stimulant medications such as methylphenidate (Ritalin). Studies show that these medications depress appetite in children, resulting in a slower rate of weight gain and growth. These effects on growth may be significantly reduced by taking “vacations” from the medication during the summer or during school breaks (26). Tricyclic antidepressants (TCAs) are used to treat depression and as a treatment for ADHD for some young adults and children over six years of age. Nutrition-related side effects of TCAs include increased appetite, nausea and vomiting, constipation, and diarrhea (26). Energy Needs Assessing energy requirements for this population presents a challenge because requirements differ depending on the severity of the disability, mobility status, number of medications, and feeding problems. The results of one study of adolescents with cerebral palsy found that energy re-

quirements for both ambulatory and nonambulatory adolescents were decreased compared with a control group of normal adolescents. Fat-free mass and body weight were significantly correlated with resting energy expenditure only in the myelodysplasia group. This study suggests that the type of paralysis may affect resting energy expenditure (42,43). Another study of adults with cerebral palsy considered that the presence of athetotic movements increased the resting metabolic rate by an average of 524 kcal/day. Increased energy requirements were a result of their involuntary movements in that the subjects in this study had less fat-free mass and expended fewer calories in leisure activities than the control subjects (44). Oral Motor/Feeding Issues Oral motor problems, food allergies, chewing and swallowing problems, and food aversions complicate the process of implementing medical nutrition therapy (MNT). A study of 12,000 children (.5 to 3.5 years of age) with cerebral palsy examined risk factors for mortality, which included self-feeding skills and simple measures of mobility. Ninety percent of children with good to fair motor and feeding skills reached adulthood (45). Lack of self-feeding skill was associated with a six-fold increased risk in mortality, whereas severity of cerebral palsy, low birth weight, and degree of mental retardation were associated with a 1.4- to 3.0-fold increase in mortality. This suggests that feeding function may be as important an indicator of a child’s health outcome as mental and/or motor capacity. A large, multicentered study of children ages two to 18 years with moderate to severe cerebral palsy assessed the relationship between feeding dysfunction, health, and nutritional status. The study showed that even those with mild feeding dysfunction had poor growth and inadequate fat stores (46). Early identification, treatment, and correction of feeding dysfunction improve the health and nutritional status in the population. Many children and adults depend on caregivers to feed them the appropriate amount of food and fluid to achieve the client’s desired weight. Weekly or, at a minimum, monthly

weighings are important to evaluate whether caloric intake is adequate. The dietetics professional may need to assume the responsibility of weighing the client if the caregiver is not tracking weight. When observing a caregiver feeding a client, the dietetics professional should watch for any clinical signs of impaired swallowing function such as coughing, choking during feeding, wet sounds in throat, or changes in respiratory patterns. If any of these symptoms are noted, referral should be made to the speech therapist for further evaluation and intervention. Tube feeding may be recommended in some patients with failure to thrive, aspiration pneumonia, dysphagia, or the inability to ingest adequate calories orally to promote growth or maintain nutritional status. A tube feeding requires ongoing monitoring and evaluation by the registered dietitian. Monitoring is critical in the group home or community setting in which the health care provider may change frequently and not be adequately trained. CONSUMER AND HEALTH CARE TRENDS Social Changes in the United States The goal of total inclusion for infants, children, and adults with developmental disabilities makes them a part of a rapidly changing culture and society. The racial and ethnic diversity of America’s children and young adults continues to increase. In 2000, 64% of children and adolescents were white, with increasing numbers of Hispanic, black, Asian/Pacific Islanders, and American Indians. The percentage of children in two-parent homes has declined (47). With the increasing numbers of individuals who do not speak English, providing nutrition education materials in appropriate languages and incorporating multicultural foods have become a significant need. In addition, nutrition materials related to food preparation, selection, and buying are needed for individuals with low literacy skills. Some families may have difficulty accepting the child with special needs and may require extra help to incorporate nutrition therapy and other types of intervention into their lifestyle. The proportion of children living in families with

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ADA REPORTS incomes below the poverty level was 16% in the year 2000; however, the poverty rate of black and Hispanic families was 30% and 27%, respectively (48). In single-parent families, the current poverty rate is 40% (48). Poverty can have a negative impact on a child’s health and development through a lack of food security. Food security has been defined as access at all times to enough nourishment for an active, healthy life. At a minimum, food security includes the availability of sufficient, nutritionally adequate, and safe food and the assurance that families can obtain adequate food without relying on emergency feeding programs or resorting to scavenging, stealing, or other desperate measures to secure food (48). Adults with developmental disabilities may also suffer from poverty. Although they are capable of working in part-time or fulltime jobs, opportunities are limited. Access to health care provides reasonable assurance for obtaining medical attention needed to maintain physical well-being. Access involves both the availability of a regular source of care and the ability of the family or someone else to pay for it. Twelve percent of all children in the United States had no health insurance of any kind during 2000. Hispanic children are less likely to have health insurance than white or black children (48). National data reporting health care provision for individuals with developmental disabilities are not yet available because of difficulty in definitions and measurement. In Healthy People 2010, the Maternal and Child Health Bureau, in partnership with the March of Dimes, American Academy of Pediatrics, and Family Voices identified six core outcomes for children with special health care needs to provide a measure of progress in making family-centered care a reality and in putting in place the systems needed. These outcomes include the following: ●

●

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the family partnering in decision making at all levels and with all services; all children receiving coordinated ongoing comprehensive care within a medical home; all families having adequate private or public insurance to pay for the services needed;

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all children receiving screening early and continuously for special health care needs; community-based systems organized so that families can use them easily; and all youths receiving the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence (49).

The concept of a medical home for infants and children with special health care needs means a source of ongoing, comprehensive, family-centered care in the child’s community. The medical home should provide preventive services, immunizations, growth and developmental assessments, screening, health care supervision, and patient and family counseling about health and psychosocial issues. The need for nutrition services is apparent because previous surveys have shown that 70% to 90% of children with special health care needs have nutritional problems (5,6). The medical home concept includes a responsibility for the practitioners to be knowledgeable about all community services and organizations available to families (49). Special Olympics provides people with mental retardation from more than 150 countries the opportunity for year-round training and competition. The nutrition section of Special Olympics is part of the Health Athletes program Health Promoter. The Special Olympics Healthy Athletes initiative provides a variety of health services designed to improve each participant’s ability to train and compete. The Special Olympics Health Athletes initiative will pilot test locally based, ongoing, health promotion programs with the goal of making good nutrition and physical fitness routine for Special Olympic Athletes. Consultations with dietitians along with other health care providers will be incorporated in the initiative (50). Special Olympics Special Smiles is a dental screening education and referral program offered under Special Olympics, Inc. The nutrition education component offers dietetics professionals the opportunity to partner with the dental profession and demonstrate to the athlete the importance

of good nutrition for overall health and fitness. The role of technology in providing nutrition information for parents and caregivers as well as for children and adults with developmental disabilities has grown. Many parents use the Internet to search for information related to the particular syndrome or disability involving their child or young adult. Nutrition information may be questionable and possibly inaccurate but may be accepted by families seeking answers. The need for accessible, accurate nutrition information from dietetics professionals is great. Parents purchase nutrition supplement packages of herbs, vitamins, minerals, and amino acids from information supplied on the Internet on the recommendation of family support group members, on the advice of health food store employees, and based on information in printed materials. The promise of increased growth and cognitive ability for their children or family member prompts parents to make these purchases. Unfortunately, research related to the use of these products, including safety and efficacy, is extremely limited. Emphasis on Wellness and the Prevention of Disease The health issues for individuals with developmental disabilities and children with special health care needs are similar to the health issues for everyone. These include physical activity, nutrition, access to health care, clinical preventive services, oral care, mental health, and family care giving. As research in the area of human genetics increases, the incidence of genetic syndromes may eventually decrease. As genetic techniques improve to identify the tendency of an individual for chronic disease such as heart disease or diabetes, new educational strategies must be developed to work with individuals with developmental disabilities and special needs in wellness programs to prevent such disorders (51). Effective nutritional therapy is important for children with metabolic disorders to survive infancy and avoid severe cognitive and physical problems. For example, conditions such as cystic fibrosis, phenylketonuria, and diabetes present unique nutritional

ADA REPORTS challenges. The key to prevention and treatment is the early identification of the disorder as well as nutrition problems and providing services throughout the life cycle related to appropriate food intake and education on healthy eating behaviors combined with physical activity (5,6). The importance of nutrition in the prevention of specific developmental disabilities is exemplified by the role of folic acid supplementation prior to and during pregnancy in the prevention of neurotube defects (52). The vital role of nutrition in the treatment of inborn errors of metabolism in the prevention of mental retardation and developmental disabilities is well known (53). The realization that treatment of inborn errors of metabolism is lifelong has resulted in the development of many dietary products that have enhanced treatment for these individuals and contributed to the possibility of lifelong compliance (54). In 2001, the Centers for Disease Control and Prevention (CDC) established a new center that will focus on birth defects and disabilities. Created by the Children’s Health Act of 2000, the CDC’s Center on Birth Defects and Developmental Disabilities is designed to improve the health of children and adults by preventing birth defects and developmental disabilities, promoting optimal child developmental, and ensuring health and wellness among children and adults living with disabilities. With the reauthorization of the Developmental Disabilities Act of 2000 (1) two new titles were authorized. One title is Family Support in which grants are provided to develop and implement statewide systems of family support services for families of children with disabilities. Nutrition services, counseling, and information should always be a part of family support services. The other new program is entitled Direct Support Workers who Assist Individuals with Developmental Disabilities. This program will develop distance learning training programs for direct support workers. Nutrition should be an appropriate part of these training modules. Parental advocacy organizations exist for many specific syndromes such as Parent Advocates for Down Syndrome (PADS), Prader-Willi Syn-

drome Association, and the National PKU Organization. These organizations work for legislative changes and the provision of accurate information to the families of their members. People with developmental disabilities are becoming more connected to their regular community and each other and are forming self-advocacy organizations to help other people with disabilities. As the life expectancy of individuals with developmental disabilities increases, the chronic diseases associated with aging emerge and require identification and treatment. Under Medicare Part B Outpatient Services, two disorders can be treated by MNT, diabetes and renal disease (55). Traditional nutrition counseling may not be effective for the individual who is cognitively impaired, and such nutrition counseling will require collaboration among nutrition professionals, family members, care providers, and special educators to prepare effective teaching tools (56) and adequate nutritional care. COMPONENTS OF COMPREHENSIVE NUTRITION SERVICES Policy Development Although access to health care services and equal protection of rights of all persons with developmental disabilities is guaranteed under federal law, there must be a strong working relationship between professional and advocacy groups to ensure that comprehensive nutrition services are offered. The role of nutrition in the prevention of disease and the promotion of health is included in Healthy People 2010 (49), the Surgeon General’s Report on Nutrition and Health, US Dept of Health and Human Services 1999 (57), and in Bright Futures (58). Healthy People 2010 lists health issues for the individual with special needs to attain as physical activity, obesity/overweight, nutrition, access to health care, clinical preventitive services, oral health, and mental health. The Third Report of the National Cholesterol Education Program (NCEP) (59), the American Diabetes Association Position Statement: Evidence-Based Nutrition Principles and Recommendations for the Treatment and Prevention of Diabetes and Related Complications (60), and the

American Cancer Society and the Nutrition Screening Initiative (61) have published support for the inclusion of MNT in the prevention and treatment of disease. Individuals with special health care needs and disabilities will also benefit from the provision of these nutrition services. Financing Coordination among multiple agencies and disciplines is needed to foster the potential growth of the infant to a healthy adult. The Federal Interagency Coordinating Council was established in 1991 to improve collaboration between various federal agencies serving families and children and includes representatives from the National Institute of Mental Health; Bureau of Indian Affairs, Office of Special Education Programs; Division of Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention, Maternal Child Health Bureau; Social Security Administration and many others for early intervention programs. The Supreme Court’s decision in Olmstead v LC charged states with developing community-based services to allow people to live as independently as is appropriate (62). Group homes in the community for both adults and children with a wide range of disabilities operate with state and local funding. The most recent trend is toward adults living independently in their own apartments, with interdisciplinary teams directing their care and services. Often the registered dietitian is not a part of this team. Dietetics professionals need to accept this challenge and seek out the agencies that provide services for these clients and advocate for the inclusion of dietetic services. Nutrition Services The dietetics professional’s role as an effective member of the health care team is to assess the clinical, biochemical, and anthropometric measurements; dietary concerns; and feeding skills as well as understand the environmental, social, economic, and educational factors affecting the intervention plan for the client. As a team player, this includes training other disciplines, families, and care-

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ADA REPORTS givers on food selection and preparation. Because community-based programs have financial constraints, education of the providers/staff can influence the food selection process. The American Dietetic Association and its state affiliates often have continuing education programs to expand the knowledge of the dietetics professional in areas specific to this population. Roles and Responsibilities of the Dietetics Professional Services provided by the dietetics professional are essential to the health of the client with special needs. Screening may be done by another member of the health care team, who refers the client to the dietetics professional for assessment (63). Because many clients with developmental disabilities have conditions that delay physical growth, the nutrition assessment should target some of these deviations, for example, those individuals with chronic respiratory failure who require the use of a ventilator or individuals with dysphagia or feeding problems. Cognitive assessments provide understanding of the client’s functional ability to develop appropriate treatment plans. Lower level literacy programs may be appropriate for this population. A study examined the factors influencing nutrition education for persons with low literacy skills. The result of the research suggested that effective nutrition interventions must build on patients’ social networks, appear in a visually based and interactive format, and be culturally appropriate (64). Evaluation of feeding skills is an important component of the assessment and treatment program. The goal of the feeding program may be to achieve independence without placing the client at nutritional risk. Occupational therapists and speech language pathologists work with the team to determine the treatment plan for the client, which may include self-help feeding devices (65-68). Often the dietetics professional is the team member who reinforces the plan and determines the food appropriate for the client. Education The Administration on Developmental Disabilities (ADD) is a federal pro-

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gram that supports a system of statebased programs designed to help people with developmental disabilities such as mental retardation live productive, independent lives in the community. ADD funds at least one University Center for Excellence (UCE) in Developmental Disabilities Research, Training, and Service in every state and most territories. The Maternal and Child Health Bureau funds Leadership Education in Neurodevelopmental Disorders (LEND) programs in many states. Previously known as University Affiliated Programs (UAPs), both the LEND and the UCE are located in universities and mandated to work in and with the communities they serve. The goal of the nationwide network is to bring validated, best-practice disability initiatives into community practice in each state. UCEs translate scientific research into practice through interdisciplinary research, training activities, and service demonstration efforts. UCEs train professionals for leadership positions and direct care workers for community services; work to ensure that systems are designed so that people with developmental disabilities have access to the services and supports they need; conduct research and validate emerging stateof-the-art practices; provide technical assistance to agencies and the community; and disseminate information to individuals with disabilities, families, public and private agencies, and policymakers. Dietetics professionals should locate the UCE in their community and investigate the services available. This is another window of opportunity for the dietetics professional seeking to provide nutritional services for this population (18). Protocols/Standards of Care The American Dietetic Association has not yet developed protocols for nutrition services specific to the population with developmental disabilities and special health care needs. However, many of the diseases and conditions for which protocols have been developed, such as diabetes mellitus and cardiovascular and renal disease, occur in this population. Dietetics professionals can use the MNT protocols developed by ADA for these diseases and conditions. A long-term goal to develop protocols for this pop-

ulation would lead the way in achieving the goal of increased reimbursement. Protocols for cystic fibrosis and high-risk prenatal care are included in the 1996 ADA publication MNT Across the Continuum of Care (69). Recommendations To provide comprehensive nutrition services for infants, children, and adults with developmental disabilities and special health care needs, the American Dietetic Association recommends that dietetics professionals do the following: ●

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develop and implement content and/or field experience that addresses the nutrition needs of persons with developmental disabilities and special health care needs in undergraduate and graduate nutrition programs; provide specialized interdisciplinary nutrition training for practicing dietetics professionals to address the health care needs of these persons; provide the opportunity for increasing the level of nutrition knowledge related to children and adults with developmental disabilities and special health care needs among all health care and human service providers; support programs that promote health and wellness for persons with developmental disabilities and special health care needs throughout the life cycle; promote and provide nutrition services, including ongoing nutrition monitoring, as an essential component of health care programs; support inclusion of nationally credentialed dietetics professionals experienced in the nutrition needs of persons with developmental disabilities and special health care needs in agencies developing policy in the areas of education, vocation, and health services at the federal and state levels; collaborate with health care providers to ensure that there are policies in place to promote family-centered, interdisciplinary, coordinated, community-based, culturally competent services; develop and implement evidencebased MNT protocols that address

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the unique needs of this population across the life cycle; encourage participation of nationally credentialed dietetics professionals on primary and specialty care teams and in vocation, education, and residential programs that serve this population throughout the life cycle; work to obtain reimbursement for MNT as part of comprehensive health care for people with developmental disabilities and special health care needs; and support and promote nutrition research in the areas of obesity, diabetes mellitus, hypertension, cardiac, and other diseases in an effort to continuously improve the quality of life for those with developmental disabilities and special health care needs.

References 1. Developmental Disabilities Assistance and Bill of Rights Act. PL 106-402; 2000. 2. Beange H, McElduff A, Baker W. Medical disorders of adults with mental retardation: A population study. Am J Mental Retard. 1995; 99:595-604. 3. Hand JE. Report of a national survey of older people with lifelong intellectual disability in New Zealand. J Intellect Disabil Res. 1994;38:275-287. 4. McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, Perrin JM, Shonkogg JP, Strickland B. A new definition of children with special health care needs. Pediatrics. 1998;102:137-140. 5. Bayerl CT, Ries JD, Bettencourt MF, Fisher P. Nutrition issues of children in early intervention programs: primary care team approach. Semin Pediatr Gastroenterol Nutr. 1993;4:11-15. 6. Ekvall S, Ekvall V. Early Intervention and Nutrition. In: Stevens F, Ekvall S, eds. Empowering Children Through Early Intervention with Good Nutrition—Focusing on Culturally Diverse Children with Special Health Care Needs. Manual IV, MCHB. Rockville, MD: HRSA; 2001:7-20. 7. Centers for Disease Control and Prevention. Developmental Disabilities. Atlanta, GA. Available

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tion and Feeding for Persons with Special Needs. Pierre, SD: South Dakota University Affiliated Program University of South Dakota School of Medicine and the South Dakota Department of Education and Cultural Affairs—Child and Adult Nutrition Services; 1992. Nutrition Interventions for Children with Special Health Care Needs. Washington State Department of Health; March 2001. Publication No. 961-158. Wooldridge NH. Pulmonary diseases. In: Samour PQ, Helm KK, Lang CE, eds. Handbook of Pediatric Nutrition. 2nd ed. Gaithersburg, MD: Aspen Publishers, Inc; 1999:315-353. Alexander DR. Preterm birth: Etiologies, mechanisms and prevention. Prenatal Neonatal Med. 1998;3:3-9. Hoffman CJ, Aultman D, Pipes P. A nutrition survey of and recommendations for individuals with Prader-Willi syndrome who live in group homes. J Am Diet Assoc. 1992;92:823-830. Ekvall S. Pediatric Nutrition in Chronic Diseases and Developmental Disorders. New York, NY: Oxford University Press; 1993. Kao C, Chen C, Wang S, Yeh S. Bone mineral density in children with Down syndrome detected by dual photon absorptiometry. Nucl Med Commun. 1992;13:773-775. Supulveda D, Allison D, Gomez J, Kreibich K, Brown R, Pierson R, Heymsfield S. Low spinal and pelvic bone mineral density among individuals with Down Syndrome. Am J Ment Retard. 1995;100:109-114. Kim SH, Vlkolinsky R, Cairns N, Lubee G. Decreased levels of complex III core protein 1 and complex V ␤ chain in brains from patients with Alzheimer’s disesase and Down syndrome. Cell Mol Life Sci. 2000;57:1810-1816. Kim SH, Shim KS, Lubee G. Human brain nascent polypeptideassociated complex ␣ subunit is decreased in patients with Alzheimber’s disease and Down syndrome. J Investig Med. 2002;50: 293-301. Oliver C, Crayton L, Holland A, Hall S, Bradbury J. A four-year prospective study of age-related

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cognitive change in adults with Down’s syndrome. Psychol Med. 1998;28:1365-1377. Center for Disease Control. 2000 CDC Growth Charts: United States. Atlanta, GA; 2000. Available at: http://www. cdc.gov/growthcharts. Accessed September 24, 2003. Ekvall S. Myelomeningocele. In: Ekvall S, ed. Pediatric Nutrition in Chronic Diseases and Developmental Disorders. New York: Oxford University Press; 1993:107114. Baer MT, Kozlowski BW, Blyler EM, Trahm CM, Taylor ML, Hogan MP. Vitamin D, calcium and bone status in children with developmental delay in relation to anticonvulsant use and ambulatory status. Am J Clin Nutr. 1997;65:1042-1051. Sutton E, Factor AR, Hawkins BA, Heller T, Seltzer GB, eds. Older Adults with Developmental Disabilities. Optimizing Choice and Change. Baltimore, MD: Paul H. Brookes Publishing Co; 1993. Bandini LG, Schoeller DA, Fukagawa NK, Wykes LJ, Dietz WH. Body composition and energy expenditure in adolescents with cerebral palsy or myelodysplasia. Pediatr Res. 1991;29:70-77. Grogan C, Ekvall S. Body composition of children with myelomeningocele determined by K, urinary creatinine and anthropometric measures. J Am Coll Nutr. 1999; 18:316-325. Johnson RK, Goran MI, Ferrara MS, Poehlman ET. Athetosis increases resting metabolic rate in adults with cerebral palsy. J Am Diet Assoc. 1996;96:145-148. Strauss DJ, Shavelle RM, Anderson TW. Life expectancy of children with cerebral palsy. Pediatr Neurol. 1998;18:143-149. Fung EB, Samson-Fang L, Stallings VA, Conaway M, Liptak G, Henderson RC, Worley G, O’Donnell M, Calvert R, Rosenbaum P, Chumlea W, Stevenson RD. Feeding dysfunction is associated with poor growth and health status in children with cerebral palsy. J Am Diet Assoc. 2002;102:361-373. Forum on Child and Family Statistics. America’s Children: Key

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National Indicators of Well Being. Vienna, VA: 2001. Available at: http://childstats.gov/ac2001/ ac01.asp. Accessed August 21, 2003. Forum of Child and Family Statistics. Child Poverty and Family Income, in America’s Children. Vienna, VA: 2001. Available at: http://childstats.gov/ac2001/econtxt. asp#econ1a. Accessed August 21, 2003. US Dept of Health and Human Services. Healthy People 2010: Understanding and Improving Health. 2nd ed. Washington, DC: US Government Printing Office; November 2000. Stock No. 017001-001-00-550-9. Special Olympics. Special Olympics Healthy Athletes. Washington, DC. Available at: http:// www.specialolympics.com/special⫹ olympics⫹public⫹website/english/ coach/coaching_guides/section⫹1/ healthy⫹athletes.htm. Accessed October 16, 2003 Owen AL. Entering the Era of Dynamic Change. In: Owen AL, Splett PL, Owen GM, eds. Health and Nutrition. Nutrition in the Community: The Art and Science of Delivering Services. 4th ed. Boston, MA: McGraw Hill Companies, Inc; 1999:610-627. American Academy of Pediatrics. Committee on Genetics. Folic acid for the prevention of neural tube defects. Pediatrics. 1999;104:325-327. Winter S, Buist NR. Inborn errors of metabolism, medical and administrative orphans. Am J Managed Care. 1998;4:1164-1168. Matalon KM. Developments in phenylketonuria. Top Clin Nutr. 2001;16:41-50. Medicare Coverage Policy: Decisions. Available at: http://cms. hhs.gov/mcd/viewncd.asp?ncd_ id⫽80-3&ncd_version⫽1&show⫽ all. Accessed August 21, 2003. Marcario E, Emmons KM, Sorensen G, Hunt MK, Rudd RE. Factors influencing nutrition education for patients with low literacy skill. J Am Diet Assoc. 1998;98:559-564. US Dept of Health and Human Services. The Surgeon General’s Report on Nutrition and Health; 1999. DHHS Stock No. 011-017024-01653-5.

ADA REPORTS 58. Story M, Holt K, Sofka D. Bright Futures in Practice: Nutrition. 2nd ed. Arlington, VA: National Center for Education in Maternal and Child Health; 2002. 59. US Dept of Health and Human Services. Third Report of the National Cholesterol Education Program; May 2001. NH Publication No 01-3670. 60. American Diabetes Association Position Statement. Evidencebased nutrition principles and recommendations for the treatment and prevention of diabetes and related complications. J Am Diet Assoc. 2002;102:109-118. 61. A Physician’s Guide to Nutrition in Chronic Disease Management for Older Adults. Nutrition Screening Initiative Special Chronic Disease Edition. Issue 34. Washington, DC; Winter 2002. 62. Vickery K. Community Life. Provider. 2001;Dec:20-34. 63. Council on Practice Quality Management Committee. Identifying patients at risk: ADA’s definitions for nutrition screening and nutrition assessment. J Am Diet Assoc. 1994;94:838-839. 64. Macario E, Emmons KM, Sorensen G, Hunt MK, Rudd RE. Factors influencing nutrition education for patients with low literacy skills. J Am Diet Assoc. 1998;98:559-564. 65. Case-Smith J. Self-care strategies for children with developmental deficits. In: Christiansen C, ed. Ways of Living: Self-Care

Strategies for Special Needs. Bethesda, MD: The American Occupational Therapy Association, Inc; 1994. 66. Pedretti L, Umphred D. Teaching and learning in occupational therapy. In: Early MB, ed. Physical Dysfunction Practice Skills for the Occupational Therapy Assistant. St. Louis, MO: Mosby Yearbook, Inc; 1998. 67. Mayall JK, Desharnais G. Positioning in a Wheelchair: A Guide for Professional Caregivers of the

Disabled Adult. 2nd ed. Thorofare, NJ: Slack Inc; 1995. 68. McCuaig M. Self-care management for adults with movement disorders. In: Christiansen C, ed. Ways of Living: Self-Care Strategies for Special Needs. Rockville, MD: American Occupational Therapy Association, Inc; 1994. 69. The American Dietetic Association. Medical Nutrition Therapy Across the Continuum of Care. Chicago, IL: American Dietetic Association; 1996.

ADA Position adopted by the HOD Leadership Team on May 3, 2003. This position is in effect until December 31, 2008. ADA authorizes republication of the position statement/support paper, in its entirety, provided full and proper credit is given. Requests to use portions of the position must be directed to ADA headquarters at 800/877-1600, ext 4835, or [email protected]. Authors: Harriet Holt Cloud, MS, RD, FADA (Nutrition Matters, Birmingham, AL); Mary Ellen Posthauer, RD (M.E.P. Healthcare Dietary Services, Inc, Evansville, IN) Reviewers: Judith Amundson, MS, RD, FAMMR (University of Iowa Center for Disabilities and Development, Iowa City, IA); Cynthia Taft Bayerl, MS, RD (Massachusetts Department of Public Health, Boston, MA); Consultant Dietitians in Health Care Facilities dietetic practice group (Eileen Monahan Chopnick, MBA, RD, Jefferson Health System, Radnor, PA; Judy A. Cox, MS, RD, Renal Medicine Associates, Clovis, NM); Dietetics in Development and Psychiatric Disorders dietetic practice group (Ruth Ann Foiles, MPA, RD, dietetic consultant, Lansing, MI); Sharon Feucht, MA, RD (University of Washington, Seattle, WA); Mimi Kaufman, MPH, RD, LD (Texas Department of Health, Austin, TX); Pediatric Nutrition dietetic practice group (Molly Holland, MPH, RD, University of Vermont, Burlington, VT) ; Lakshman Rao, PhD, RD (South Carolina Department of Mental Health, Columbia, SC); Janet Horsley Willis, MPH, RD (Partnership for People with Disabilities, Virginia Commonwealth University, Richmond, VA) Members of the Association Positions Committee Workgroup: Barbara Emison Gaffield, MS, RD (chair), Sonja Connor, MS, RD, Betty Lucas, MPH, RD (content advisor).

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